Written evidence from Care England (HCS0017)

Submitted by Mr George Appleton, Policy Manager, Care England

1 Introduction

Care England is always happy to engage in any exploration of social care that is aimed at improving standards in practice. We must, however, question the basic design of this stage of the Committee’s enquiry. The rubric and survey seem to make it explicit that the Committee is looking for examples of human rights being undermined or put at risk in care settings. We would hope that the Committee will also elicit accounts of the exceptional care which is to be found in adult social care, which demonstrates in practice profound and person-centred respect for individual human rights, especially, as highlighted by Eleanor Roosevelt, in ‘the small places’ of daily living, and delivered with creativity and courage to enhance the lives of vulnerable people.

The Committee will surely take care not to bias the final report towards unfairly focusing only on bad practice, while further undermining those working in the field by failure to recognise excellent practice and, perhaps more seriously, by an inevitable failure to provide vivid, essential learning by example, disseminated with the authority of this Committee, by sharing practical examples of what great, person-centred, human rights-enhancing care looks like.

We welcome the question asking what lessons can be learned from what happened during the pandemic. Here, the fault does appear to lie within government, and lessons need to be learned with some alacrity: see below for further detail. More waves of coronavirus variants, or further viral pandemics, cannot be ruled out, and those who are making vital decisions about how to protect citizens from extreme harm, within the context of basic human rights, need to learn from what has happened so far.

2 What human rights issues need to be addressed in care settings, beyond the immediate concerns arising from COVID?

The human rights that are potentially at risk in care settings are Article 3, the right to be protected from torture and from inhuman and degrading treatment, Article 5, the right to liberty, and Article 8, the right to privacy and freedom to ‘live as one chooses’ without interference.

Breaches of Article 3 can never be acceptable; this is the absolute foundation of care. Breaches of Article 5 rights are rightly far more recognised than before the seminal judgements firstly of HL v the United Kingdom (2004) which gave rise to protections against breaches of Article 5 being enshrined in the Deprivation of Liberty Safeguards (DoLS) and, a decade later, by the so-called Cheshire West case (2014) which hugely widened yet further our recognition, as a country, of the ubiquity of breaching of people’s Article 5 rights in all settings, and for all adults aged 16 and older. This wide-ranging judgement led to the Mental Capacity (Amendment) 2019 which, in turn, is leading to the imminent replacement of DoLS with the liberty protection safeguards (LPS) which will apply throughout health and social care to protect the Article 5 rights of people aged 16 and older who lack capacity to consent to arrangements to give them necessary care or treatment, where those arrangements are sufficiently restrictive that they amount to a deprivation of liberty.

Increasing use of the MCA including DoLS in practice has led to a greater recognition of the centrality of Article 8 rights.

3 How effective are providers at respecting the human rights of people under their care?

Part of the ethos, and indeed of the legal framework (including the Human Rights Act, Mental Capacity Act, Care Act, Convention on the Rights of Persons with Disabilities and CQC human rights frameworks for regulation), of both DoLS and LPS is for commissioners and providers of care to continue always to seek options for delivering care that are the least restrictive possible of the individual’s basic human rights. In tandem with this DoLS (and in future LPS) provide for external scrutiny of existing or proposed care plans, as well as of the basic assessments of the person’s lack of capacity and the existence and persistence of mental disorder; these frameworks also allow for skilled advocacy (through the Mental Capacity Act (MCA) independent mental capacity advocate (IMCA) service, both to help in putting the individual, their wishes, feelings, and cultural background at the heart of finding the most restrictive care plan possible, and in addition, vitally, to enable a challenge to be brought to the Court of Protection against any aspect of the DoLS (or in future LPS) authorisation.

The existence of this process has encouraged learning about human rights (especially articles 3, 5 and 8) among care providers and also among commissioners: training based within the empowering ethos of the MCA is generally mandatory at the level of individual providers, (though it suffers greatly in healthcare by ongoing lack of status as ‘statutory and mandatory’ within NHS training).  It is fair to say, however, that this process has struggled and certainly slowed down after successive years of so-called ‘austerity’ which removed funding from the sector.

Within this history and framework, the picture is certainly mixed. Evidence from CQC inspection reports shows some excellent practice, of lives being enhanced by creative, person-centred care that is based around Article 8 by valuing individuality and making the systems follow the person’s wishes, feelings, and culture, rather than fitting the person to sclerotic systems.

Ongoing austerity for over a decade, ongoing rates of below-inflation increase being paid by local authorities, and the ongoing effects of Brexit (plus the pandemic) on recruitment have all put huge stress on providers.  Turnover of staff has for some years been over 25% annually and is now far higher than that. This makes creating a culture of human rights enhancement difficult.  New staff are well meaning but have no relationships with the people they serve or their relatives, and they may tend to be risk-averse through lack of knowledge. It is hard within a care setting to retain crucial knowledge of each individual and how they like to live, which has developed through human interactions. It takes time and sensitive support to enable new staff to create good, trusting relationships with residents or others they provide a service too; yet there is a increasing turnover among management and experienced staff too.  Good staff, both senior and less so, are exhausted and overworked: they leave the sector taking with them their skills, their human rights-based culture and learning, and their knowledge of individuals who have grown to like and trust them.

4 How effective are regulators in protecting residents from human rights breaches in supporting patients and residents who make complaints about their care provider?

It was a problem for the Care Quality Commission (CQC) that it came into being on the same day as DoLS did: 1 April 2009. This was shortly followed by the unprecedented ‘austerity’ measures starting in 2010. Only with the authoritative report of the House of Lords post-implementation scrutiny of the MCA in 2014 with its specific recommendations that CQC should inspect specifically against the statutory, human rights-based principles of the MCA, that CQC gained a better understanding of the protective and empowering nature of the MCA including DoLS, and began inspecting services explicitly against MCA key lines of enquiry.

This certainly has helped improve practice in both health and social care: for example, Care England and others were able to feed back to both CQC and the Department of Health and Social Care how important Article 8 rights are, when it is necessary and proportionate to deprive someone of their liberty in their best interests.  Recognising and enabling someone’s joy in their family and friends, building into their care plan the value someone places on religious, political or sporting ties, and understanding the importance of someone’s unique personal history: all these give a foundation of good care that is firmly based in Article 8.

Providers still find that inspectors may have an imperfect knowledge of how DoLS operate (for example insisting that every resident should have a DoLS authorisation, whether their care plan does deprive them of their liberty or not, and sometimes even when they don’t lack capacity). This can lead to the provider being judged, for example by the local authority DoLS service, as having a poor knowledge of DoLS and the wider MCA, when they are acting on ‘guidance’ from a CQC inspector.

5 What lessons need to be learned from the pandemic to prevent breaches of human rights legislation in the future?

Three major problems on the part of government need addressing urgently and lessons learned. They relate to varying outcomes of the clear lack of recognition among decision-makers of the humanity and the individuality of people who receive care services, coupled with a lack of even the most elementary knowledge of either the Human Rights Act, the Mental Capacity Act or the Convention on the Rights of Persons with Disabilities. The tone of public health guidance was far too cavalier and dismissive of the rights of a vulnerable people and indeed appeared to many commentators to be clearly in breach of human rights law.

1. Early in the pandemic: People were sent into care homes, or returned from hospital to their existing homes, without any care for whether they were infectious. Once there, their care staff were advised by government that masks or proper medical standard PPE were not needed. It appears that doctors were encouraged – unlawfully – to produce blanket Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) guidance for care home residents, and even seemed to suggest, inaccurately, that these were mandatory.  In this instance, CQC ‘came up trumps’ when they heard of this practice by creating a huge fuss, which led to them being quietly abandoned. But who knows how many people’s basic Article 2 right to life had been abused by then? In addition, people with symptoms of COVID-19 in care homes were at this stage of the pandemic neither tested nor admitted to hospital: again, who knows how many might have lived with some basic treatment? Or indeed had some other condition? With no visits allowed, these residents, together with their unnecessary suffering, were out of sight, out of mind to government.

2. In the middle of the pandemic: As the pandemic unfolded, Care England, together with human rights lawyers and other experts, expressed dismay to government frequently at the ongoing breaches of basic human rights visited on people in residential care services, as a direct result of government pandemic-related guidance. At a time when, for example, the rest of the population was being exhorted to ‘eat out to help out’ (August 2020) government guidance insisted that those living in residential care were still allowed almost no visitors except when they were dying, and not permitted to touch those relatives who were allowed near. Residents were explicitly ordered not to go out of the care home or supported living setting even for a walk or a meal in a pub garden and warned that to do so would render then liable to 14 days compulsory solitary confinement in their rooms. Similar restrictions persisted even after all service users had been doubly vaccinated: the rest of us were told we didn’t need to wear masks in night clubs or on trains, but people in care services were still not being allowed out.  We heard of young adults with learning disabilities in supported living who were not allowed to return to their jobs or even visit their family homes, long after all restrictions were lifted on the wider population: this was a direct result of government coronavirus guidance, which explicitly distinguished one sort of inhabitant of the country from others. It is inexplicable and unforgiveable that, even after uproar from service users and their relatives, together with so many other organisations including Care England, the guidance coming out of Public Health England remained so at odds with the Mental Capacity Act’s empowering ethos, and the drive of human rights law towards equality of treatment of all citizens.

3. Throughout the pandemic: Care providers were persistently refused the COVID-19-related protection from liability which was given to their colleagues in the NHS, even after this disparity was made very plain to government. Given this, it is no surprise that we saw risk-averse practice, especially since this was the inescapable result of following government guidance. Indeed it is extraordinary, and to be praised, that some care providers were so distressed by this inequity that they quietly flouted these appalling restrictions on the rights of those they supported, and acted on the basis of individual risk assessments as they have always done, to allow vaccinated people to get together with their much-loved vaccinated relatives, or to do things they passionately wanted to do, without imposing the ongoing ‘solitary confinement’ on their return.

01/11/2021